Side Effect for Children: Day-Care Dilemmas

By

Kate Linebaugh

Updated May 8, 2012 12:22 p.m. ET

In the weeks after Andi Smith's 13-month-old son, William, was diagnosed with Type 1 diabetes, the mother of two was dealt another blow: Her day-care providers refused to treat his condition. So for six months, Ms. Smith, a veterinary assistant, dashed out on her lunch break to give her son his insulin shot."I broke down and I thought, 'I can't keep doing this,' " Ms. Smith said.

Parents Seek Care for Diabetic Toddlers

Caleb Macias, age 3, watched as his sister Hannah, age 5, helped their mother, Jennifer Macias, hold his blood glucose meter in the morning before he ate breakfast at their home in Flower Mound, Texas. Caleb has Type 1 diabetes. Mei-Chun Jau for The Wall Street Journal

WSJ's "Informed Patient" columnist Laura Landro and reporter Kate Linebaugh spoke with readers on May 8. Read the full transcript.

"No, we can't even do testing. No, we don't do shots," said Ms. Smith. "You really feel slapped in the face, when you tell them it is illegal and they say they don't care. Talk about feeling like your kid is a leper."

Under the Americans With Disabilities Act, children with diabetes cannot be excluded from public and private day-care centers based on their condition. In 1996, the Justice Department reached a settlement with the nation's biggest day-care chain—KinderCare Learning Centers—in which the provider agreed to care for children with diabetes.

In practice, however, parents of diabetic toddlers are excluded regularly, parents and advocates say. Many centers cite state and local laws that require certification for administering medicine like insulin as a reason. Small home-based child-care operations with limited staff and resources argue that taking care of diabetics would disrupt their programs and interfere with the other children.

"There are 50 states, there are 50 different ways of doing this unfortunately," said Katie Hathaway, director of legal advocacy at the American Diabetes Association. She argues that day-care centers "have to have somebody who provides insulin to those kids."

Experts acknowledge that managing diabetes in the youngest children is tough. While they may not resist the shots as much, they cannot say when their sugar levels are low or high.

"Type 1 is much more complex to manage in the preschool age group because they cannot articulate their needs," said Steven Willi, director of the Diabetes Center for Children at the Children's Hospital of Philadelphia. "The onus of care that is required is all placed upon the parent or care provider."

ENLARGE

For meals and snacks, Caleb sits in a high chair to keep him and other kids from sharing food.
Mei-Chun Jau for The Wall Street Journal

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For parents who have been excluded from day care, advocates say the best approach is to offer to educate the provider about managing diabetes and involve the health-care provider in setting up a plan. If the exclusion persists, filing a complaint with the Justice Department or hiring legal help may be effective.

"These are enforceable rights under the civil disability rights laws," said Nina Loewenstein, a senior staff attorney at Disability Advocates Inc., an Albany, N.Y.-based nonprofit law office that advocates for individuals with disabilities. "That is a possible recourse and may be the only one to open up access."

Day-care centers that do accommodate diabetic children hold meetings with parents to come up with detailed plans for how to give the insulin, how to check the blood sugar and what to do in the event of high and low blood sugar levels.

As many as three million American have Type 1, or "juvenile" diabetes, according to JDRF, formerly the Juvenile Diabetes Research Foundation. The rate is growing about 3% a year, rising fastest among children 5 and under, according to Lori Laffel, chief of pediatrics at the Joslin Diabetes Center. The Centers for Disease Control and Prevention estimates there are 15,600 new Type 1 cases in children under 20 every year.

ENLARGE

Unlike Type 2, or "adult onset" diabetes, Type 1 is typically triggered early in life by an autoimmune disorder that destroys the insulin-producing cells in the pancreas. Type 2 diabetes is characterized by insulin resistance due to obesity and physical inactivity.

Type 1 diabetics are dependent on external insulin, the hormone that controls the level of blood sugar. Treatment involves pricking fingers throughout the day to gauge the amount of glucose in the blood and administering insulin to help the body process carbohydrates as they are consumed.

Rising rates of Type 1 in the U.S. are difficult to track, as there isn't a national repository of data. A study partially funded by the CDC will release new data next month.

Experts don't have a clear understanding of why the disease is on the rise. Theories range from vitamin D deficiency to increased consumption of cow's milk, from richer diets and heavier children to improved overall hygiene. Each of these trends correlates with increased incidence of Type 1, but researchers haven't been able to find a definitive causal relationship.

Like other parents, my husband and I went through a frustrating search for day-care centers in Brooklyn, N.Y., this year after our 1-year-old son, Enzo, was diagnosed with Type 1 diabetes. We found only one with openings that was willing to accommodate a diabetic child, and in the end decided to hire a full-time caregiver.

Related Video

Cases of Type 1 diabetes are rising at about 3% a year and it isn't clear why. Thanks to new genetic and antibody tests, researchers can predict who is at risk for developing the disease. Laura Landro has details on Lunch Break. Photo: Percella Scarpinato.

In February, Jennifer Macias noticed her son, Caleb, then 2, was acting lethargic and drinking and urinating a lot. She thought he had a persistent cold. But when he passed out one morning, she rushed him to the emergency room in the Dallas suburb of Flower Mound, Texas.

There doctors tested his blood sugar, which came in about 700, roughly seven times higher than normal. That day, five weeks before his third birthday, Caleb was diagnosed with Type 1 diabetes.

The mother of three called her child-care providers to let them know. By the end of that week, she was told that she could keep her son there only if she came every day to administer the shots and to check his sugar level throughout the day, which wasn't feasible.

"At that time, I had no other options," Ms. Macias said. "I was a scared mother trying to accept the reality of my son having diabetes, working full time and taking care of my three kids."

She started calling around to other care providers and, like Ms. Smith, received largely negative responses. She found one that would administer insulin, but it cost $240 a week, 50% higher that what she had been paying.

Eventually she found a center experienced with diabetes that charged $169 a week. "I hated to move them," she said. "It was totally worth it for the sake of having people who knew how to give insulin."

At the new center, Ms. Macias typed up a detailed plan for how to manage Caleb's diabetes, how much insulin to give based on what he eats, how to measure the number of carbohydrates he consumes and how to test his blood sugar.

On the wall of Caleb's day care, the Peanut Gallery, is a list of the carbohydrate count of any of the foods he might eat for lunch.

"A lot of child-care providers aren't comfortable with it. You hear diabetes and it scares a lot of people," said Christy Findlay, director of the Peanut Gallery day care. "Once you know about it and once you are educated about it, it's not really a problem."

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